poconnor

soheb, 6 months ago to random

Has anyone tried the GMPro powder/drink in comparison to the PKU Sphere? What did you think of it?

#PKU #ClassicPKU #LowProtein #LowProteinDiet #Phenylketonuria #Phenylalanine

poconnor, 7 months ago to random

An unexpected trip back to NZ has delayed the PigPen Newsletter this month (everyone is fine - now!).

The November Newsletter 🍂 covers:
➡️ Emergency travel with PKU
➡️ What is LNAA?
➡️ New talking therapy for depression

Plus autumn baking with a tasty Ginger Slice

https://mailchi.mp/b559d165908d/pigpen-newsletter-pku-brain-injury-and-mental-health-9135032

soheb, 7 months ago to random

Our very own @poconnor has written a new update to her newsletter!

All about the ESPKU including the best panel ever held*, and some details about brain injury. Not only that, but it closes on a final thought which-my word, I really needed that about now, so thank you Pauline!

You can read it here (and maybe subscribe, would you?)

• according to me

https://mailchi.mp/b559d165908d/pigpen-newsletter-pku-brain-injury-and-mental-health-9135032?e=c53e4b7d0f

#PKU #Phenylketonuria #Phenylalnine #newsletter #LowProtein #LowProteinDiet #diet #BrainInjury #StephenHawking

poconnor, 7 months ago to random

What is Large Neutral Amino Acid (LNAA) treatment?
this is an additional treatment for #PKU [https://pkutalk.com/tags/PKU] which is
used in certain European nations. In my book, "Living with PKU," I discussed
LNAA and you'll find an excerpt on my blog:
https://pigpen.page/what-is-lnaa/ [https://pigpen.page/what-is-lnaa/]

#LivingWithPKU [https://pkutalk.com/tags/LivingWithPKU] #NSPKU2023
[https://pkutalk.com/tags/NSPKU2023] #ESPKU2023
[https://pkutalk.com/tags/ESPKU2023] #LowProtein
[https://pkutalk.com/tags/LowProtein]

soheb, 7 months ago to random

Ah, so that’s why I haven’t been feeling so good despite the flu jab…

poconnor, 7 months ago to random

Bring on the weekend! Lots of #PKU samples to play with after #ESPKU at the weekend.

Anyone got anything they will be trying out? I'm thinking cookies to help me survive the rugby tomorrow.

But first, walkies!

poconnor, 7 months ago to random

"Best session at any conference, ever!"

Many thanks to all who attended our session @ESPKU conference . Our interactive workshop on the older adult patient experience: "Starting the Conversation: a panel for adults with PKU, by adults with PKU." was a hit!

Couldn't have done it without @soheb @GirlGreenDress @NSPKU
Will have data results asap

#LivingWithPKU #ESPKU

poconnor, 7 months ago to random

What is Large Neutral Amino Acid (LNAA) treatment?
this is an additional treatment for #PKU which is used in certain European nations. In my book, "Living with PKU," I discussed LNAA and you'll find an excerpt on my blog:
https://pigpen.page/what-is-lnaa/

#LivingWithPKU #NSPKU2023 #ESPKU2023 #LowProtein

soheb, 7 months ago to random

So, am I the only unlucky one that walked away with flu from the ESPKU??? :pkuawareness: :captainphelix: :nspku:

ClairTheGinger, 7 months ago to random

Early morning cooking with pregnant Clair, trying to make #PKU friendly but also slightly higher exchange snacks, can you guess what I'm making!?🤔🤔 #PKU

poconnor, 7 months ago to random

The NSPKU / ESPKU conference has refilled the stationery cupboard- time to get writing!

#LivingWithPKU #NSPKU2023 #Authors

soheb, 7 months ago to random

I know we joked at the ESPKU that we should be getting jackets made for joining PKU Talk, but I am legitimatetely thinking about it and possibly after dinner, exploring options....

@poconnor @Chloeormerod

soheb, 7 months ago to random

The ESPKU dinner was delicious!!

#espku2023 #ESPKU #NSPKU #NSPKU2023

Two low protein deserts

poconnor, 7 months ago to random

The US guildelines now say that lifelong levels below 360 produce better intellectual outcomes.

No waffling with ages.

They feel there is strong evidence based on systematic reviews that less than 360 is best.

Well that’s a challenge!

#ESPKU2023 #NSPKU2023 #LivingWithPKU

poconnor, 7 months ago to random

Pick up a copy at ESPKU - 30% off today!

The lovely @nspku ladies at registration can help you out. Or I am roaming the conference in my dinosaur shirt and can take card payments.

#LivingWithPKU #espku

poconnor, 7 months ago to random

Me: remember, you are leading a workshop at the #PKU conference tomorrow so need to look professional.

Also me: Or… Dinosaurs 🦕!

#ESPKU #ESPKU2023 #espku #espku2023 #NSPKU2023 #nspku #NSPKU #livingWithPKU #LivingWithPKU #livingwithpku

soheb, 7 months ago (edited 7 months ago) to random Czech

Some new GMP sachets from @Nutricia - these are the lowest calorie GMP mixes on the market (the mix-in one has no taste whatsoever - they gave me a spot test to tell the difference and I failed it).

Would absolutely love to try these in the future!

#espku2023 #espku #nspku

soheb, 7 months ago (edited 7 months ago) to random Czech

A new contender - Prekulab - have two new products:

LNAA series - you can have up to 80% normal food, and the rest is tablets/powder.
AA series - up to 20% normal food, 80% tablets powder.

I believe the person said the LNAA total tablets amount is body weight in kg/2. For example, for me I’m 80kg, so I’d have 40 tablets a day.

Spread that across the day, it would probably be 10 tablets in the morning, 20 in the afternoon, and 10 in the evening. Interesting!

#espku2023 #espku #nspku